Has anyone else experienced really low white cells because of Hydroxycarbamide?

My platelets are normally controlled but because I keep having to reduce dose of Hyroxy to get whites back up, my platelets keep climbing. Its just a constant Yo Yo. Has anyone else experienced this and what was the eventual outcome? Unfortunately I get dreadful symptoms from high platelets and awful infections from low white count so 'rock and a hard place comes to mind'.

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  • Hi Indy - I`ve been diagnosed with ET for about 18 months so this has happened to me only once. I started on 1 hydroxy per day, then, when platelets went to 500 and something, from 300 and something, they put me on an extra one every other day. A few weeks later my GP sent me for a blood test for something else, and shortly afterwards I got a phone call from the hospital telling me to come off the extra hydroxy immediately, as my white cells were very low - this blood result had been picked up by the hospital. Quite happy to come off the extra hydroxyl tablet and the platelets have been fine since at around the 300`s. Before this happened I was up to 12 nudging 14 weeks between hospital visits but now I`m back to every 8 weeks so I guess this is how things will be ie they have to monitor us regularly and act on what the results tell them. Good luck - hope things settle down for you too.

  • Thanks for your feedback sksar - glad your ok now and counts settled. Your hospital sounds on the ball.

  • Yes I have been diagnosed with ET for 7 years and have had this up and down situation many times. My consultants tweak the Hydrea dosage up and down as it is a balancing act between keeping the platelets within normal ranges whilst not knocking the whites to a really low level .... I tend to go 3-6 months on one dosage keeping the platelets ok and then it tips the whites too low and the Hydrea is reduced a little and the whites go up for 3-6 months and then the platelets start to creep up again .... I usually get checked each 12 weeks but fall back to 6-8 week checks when the levels are going wrong again ..... So don't worry it is part of the pattern of the condition .... As is often mentioned on the forums keeping the immune system as good as possible helps too for when the whites are low ...lots of green tea, blueberries, well any of the foods with high antioxidant levels it helps I have found as you want as much help as possible to fight of infection (whilst not going over the top coffee and cake sometimes is nice too

  • Yes, been there many many times. It is a bit like walking a very narrow path and meds have to be adjusted every time you veer to one side or the other. As you say "rock and a hard place". I had ET for 17 years before it became post ET/MF and then I moved on to Ruxolitinib and still having to juggle with the dose of that to keep platelet count UP - a novel experience when you've lived all that time with ET! Have you thought about any other treatment for ET such as Anegrilide or Interferon?

  • Thank you all for your kind and helpful comments, they are really appreciated. I especially like the cake bit. Hi Beetle, I have tried Anagrelide but they didn't agree with me. I have toyed with the idea of Interferon, but the side effects have put me off. Hopefully things will level off and I can get back to my old self. :)

  • Could you ask your Consultant about an injection of GCSF to boost your neutrofils when they become very low whilst maintaining your hydroxy dosage sufficiently to lower your platelets? Just a thought. Good Luck

  • Oooooh that's interesting Ladymoi, never heard of such an injection, it would stop me having these lapses every few months that quite frankly get me down. I was in a really dark place last week and was just miserable and lonely because of it. Don't get me wrong most of the time when counts are under control I am so happy and just get on with it. Off to google it. Thank you :)

  • Good Luck! It would be interesting to hear how you get on. Look up Filgrastim and Neutropenia.

    I am sorry you felt so down for a while but it is really is a difficult balancing act which I absolutely understand.

    Do remember, when your white cell count is low, to try to avoid all situations where you might pick up an infection-eg Doctor's waiting rooms and also friends and family members who have colds. All my friends let me know when they can't see me because they have a cold and they have also , wisely, sent me off to see my Dr when they have recognised I have been poorly. We shouldn't wait that extra day to see if we will improve as it usually ends up in taking antibiotics for longer! I hope you are able to keep healthy and happy this winter.

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